Lung Transplant Patients in the PFF Community Registry

Sam Kirton vividly recalls when he received his IPF diagnosis, right down to the date and time: January 31, 2017 at 11:30 am.

By his next clinic visit, the feelings of shock had receded enough that he told the pulmonologist he wanted to participate in any research for which he was eligible. “Research is an investment in the future,” he says. “I’ve got two granddaughters, and I want them to not have to know what pulmonary fibrosis is like.”

Following a bilateral lung transplant in July 2021, Kirton is grateful that the PFF Community Registry specifically encourages people who have had lung transplants due to PF or ILD to join, because he believes the new Registry can bring the community together. “We have an opportunity to collectively put the power of this disease to rest by making available all the information that an investigator might need,” he says. “Transplant is a part of the solution, but it’s not the ultimate solution. The ultimate solution is a more effective therapy and a cure for pulmonary fibrosis. That’s what the PFF Community Registry has the potential to enable.”

Kirton especially appreciates that being in the Community Registry means he may have the option of completing additional surveys beyond the minimum two per year. “That’s not a commitment to participate in additional research,” he says. “It just means you’re willing to learn more about future research opportunities.”

I’m all about trying to find a cure, so I signed up for the PFF Community Registry as a lung transplant recipient. I’m lucky to get a transplant, but so many of us still need a cure.

Melissa Wheeler

Lung Transplant Recipient, Former Ironman Athlete

Many people believe that only patients can sign up and take part in registries. But at the PFF, we know that serious illnesses like PF and ILD affect each patient’s caregiver and family members, too.